update/transitioning off antibiotics

Hey, All:

Need some input. Saw my My LLMD last week and he said I could go off the Tinidozole/Minocylcine pulse since I've been on it for 6 months since I am now able to take Cat's Claw. I used to herx horribly on one drop of Cat's claw. Now I am up to 12 drops 3x a day (mixed with my other herbs). He also said I could stay on the antibiotics for two more months since I am not having any problems taking it, my choice. I do think it gives me some neuropathy (tinidozole). I've been off it for a week (for the LDI shot) and can restart anytime.

I have minimal symptoms at this point (10 months into treatment), mostly the Babesia sweats, but after 7 weeks on the Buhner Babs herbs, these are way better, maybe 2x a day, 1x a night. The adrenal weird thing has resolved (I would turn over in bed and breakout into a full sweat). Also, my neuropathy in my feet is diminishing now that I am actively foam rolling and getting electric stem. I feel the tingling standing barefoot but not in shoes. Progress!

I tracked my last bad herx (2 hours of vibrating, shoulder and hip pain, anxiety, ringing ears, some joint pain) which wasn't really that bad and it was about 18 days since the last bad one. I figured some Lyme released a new batch and my body took care of it. Either that, or the LDI created the situation. Throughout the day and night, I still have minor vibrating/ringing ear episodes that I also think are mini-herxes, maybe 2-3x a day.

I guess I am anxious about going off the antibiotics without being free from symptoms, but I'm not really going off them because I'm still taking the Cat's claw, right? I was thinking maybe I would still take them 1x a week, just to see if I could hit some biofilms, even though my LLMD says the cat's claw will also take care of the rest. I need to stay on that until I am completely symptom free. When we say stay on antibiotics for 2 months following symptom free, does that also apply to the herbal regime? If so, I think my plan is solid. Thoughts?

Congratulations on coming so far in your treatment. That is great.

I don't see where 1 abx a week would do much. I would either stay on them or be completely off of them. I hate abx. so I would try full on herbs/diet and if you get worse you can always go back on abx.

I'm sort of new so this is just an opinion. One of the 'lyme angels' will know just what you should do.

What does your intuition tell you? Keep us posted.

CR,

That would be my plan. It's pretty much what I am doing beginning next week. If symptoms that are new, return I will go back on abx.

Good luck and PLEASE keep us posted. We are all in this together. This board has saved my sanity and taught me so much.

with gratitude, -H

Yes, PeteZa, you're my inspiration!

if it's just a week wait, I would wait - unless you want to switch to something different - like tinctures.

For the core protocols, I preferred to order from sources that Buhner recommends.

For capsules, there isn't another place Buhner recommends to order from is there?

Glad to hear you feel better!
How long did you have Lyme before you started treatment?
Could you please share your abx protocol?

BBM - Thanks! I am about 95%. My doc thinks I had Lyme for at least 10 years, because its is causing autoimmune problems (my ANA jumped from 40 to 80 in one year). Hence, the LDI shots.
Here's my antibiotic protocol. It seems light compared to many others here, but he said its the European protocol, and they have a high success rate.

4 weeks of Doxy 100 1x day
2 weeks of Doxy 200 1x day
2 weeks of Doxy 100 1x/200 1x day
4 weeks of Doxy 200 2x a day

Switched to:
250 minocycline pulse every other day
Tinidozole 250 pulse every other day for 5 months.

Misc:
3 rounds of 10 days on 10 day off flucozinole/nystatin for Candida
2 rounds of Xifaxin for SIBO
2 rounds of Rifampin 3x a day for 3 days for Bart

Lisa - I had the neuropathy from the Lyme for 4 years before diagnosis, but it increased on Doxy and continued to get worse while on Tinodozole. It's now getting better with the foam rolling, taking Lion's Mane, other Buhner herbs and also doing the electric stim.

Foam rolling, unfortunately isn't soothing. I wish! It's a pretty dense foam roller and you roll your tight muscles on it. It gets better and less painful the more you do it. Unless you go work out and get tight again, which is me. LOL.

Sorry, I just saw I was asked questions.

aloevera I did tinctures - the reason is I don't like to chase pills across my kitchen floor when I try and cut them. LOL! Also I took and still take a lot of vitamins and supplements in pill form (about 20) and did not want to add to that. So my tinctures all went in a glass, a little water, swirl it around and chugged it down. I bought my tinctures from Woodland, Sage Woman, 1st Chinese and Hawaii Pharm. Sage Woman was awesome customer service and fast delivery but Hawaii Pharm was Amazon and I could order a whole bunch of items - I did have to know the Chinese names for many of them in order to buy them. If you need help, let me know should you decide to use them. Trial and error for sure. Just try and get an inventory so you don't run out of an herb. That tends to create stress and it is the last thing you need. I ran out and would panic. I ONLY did that twice and learned! Amazing with the brain fog I had.


Psilociraptor I was symptom free March and I quit all herbs June 27th. I probably went a little longer than the 2 months. And here we are August 26.... Still okay but I certainly have post traumatic stress syndrome. If I get a twinge of anything, I am so apprehensive that lyme has come back. I get moments of freedom, but something always comes around to remind me of lyme and that it is probably still in me lying dormant and waiting for me to get sick or stress...... It is a strange type of wellness.

BBM - I'm not sure what you mean by taking something else, but that was the only thing he gave me for SIBO. When I went to my initial appointment, I was having horrible pain in the right side, upper quadrant of my abdomen, only after eating. Based on that, he said he thought I had SIBO. He said take the Xifaxin for 3 days, then start the Doxy. I think there might be an interaction. I tell ya, it cleared up right away and I haven't had any pain since. Now that i think about it, I think I only did one round but he had me refill it because the insurance needed a waiver in order to pay (its ridiculously expensive) and it was time sensitive.